Help Arya fight SMA!!

Help Arya to get the world’s most expensive drug for the treatment of SMA Type 2

Hello well-wishers, this is our fundraiser page for 6 years old little girl Arya Pathak, born on 11 Oct 2014. Arya is a happy and positive kid, but the clock is ticking for her, with every passing movement she is losing a part of herself. All she asks is a chance to live a better life.

I am Sakshi Sapru, Arya’s aunt, who is helping my cousin Astha and brother-in-law Rahul to raise the funds required to save our little angel's life. Arya’s Parents are fundraising in India through their local crowdfunding platforms, but they have tried very hard but have only raised 6% of their total goal. They really need our help; can you help us to save Arya?

Arya was one year old when like every other kid she tried to stand but instead started falling on her face while crawling. We were worried because something was wrong as the crawling, scooting Arya suddenly stopped and became weak. In February 2016, she was diagnosed with SMA. We were shattered to learn about the criticality of the disease. I had dreams that she is walking around the house and playing to a point that I could not differentiate between dream and reality.

Six-year-old Arya is a smart, talkative, and playful kid. Arya has excellent interactive skills and paints very well. She loves to see other children run and has a desire to walk like them one day. She looks like a normal happy kid, but inside her condition is killing her nerves and muscles one by one. As the disease progresses, she will not be able to move her hands and legs, sit up, hold her head, or do any of the things normal kids do. Her breathing will be labored; her stomach muscles will give way, causing food to go back up to her lungs; and she will choke on her own spit and stomach fluids. Once the disease kills a particular nerve cell, we lose all function in that part of the body, which is irreversible. No amount of treatment given after the nerve cells die will help.

Arya cannot stand or walk and needs support for sitting. Physiotherapy is a part of her daily life which is very boring and painful for a 6-year-old. She also practices breathing exercises for improving her lung capacity. She has very weak lungs and a low immune system that makes her susceptible to infections. Normal cold accelerates and ends her in ICU for many weeks where she cannot even breathe on her own and needs Bipap support. Recurrent episodes of hospitalization have made her lungs even week. Arya's life expectancy depends on the kind of care she receives.

Recently, an expensive drug ZolgenSMA has been approved by European Council for kids weighing less than 21 kg for SMA. The drug costs $ 2.1 Million. According to the doctor, she is eligible for all three drugs Spinraza, Risdiplam, and ZolgenSMA. Although, the doctor prefers ZolgenSMA, followed by Spinraza. Risdiplam is the preferred last option. We as parents are keen to get her any treatment available in any part of the world through this fundraiser.

Please help us spread the word. All our social media links and locations are available on Link tree - https://linktr.ee/help.arya.fight.sma Every share, donation, encouraging word will help build our campaign up.

The early she receives treatment more of her muscles we would be able to save. We cannot save our little girl alone and need your blessings and support to get through this. Please help us.